Here are photos of some of the outstanding caregivers that look after Grace. God bless you all!

ourgrace.org Homepage

Grandma and Grandpa Farley with Grace and Dad and Mom

Grace's Pediatrician, Dr. Schwartz, Selden, Long Island, August 2004

Dr. Kristal, Grace's dermatologist, Selden, Long Island, 2004

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Grace's Medical Diary

Grace's best friend at the Ronald McDonald House, Cincinatti, Oct 2004. Thanks for all those great people who run the Ronald McDonald Houses throughout the United States!!!

Dr. Richard Azziz Khan, a fantastic pediatric surgeon from Cincinatti Children's Hospital, EB Clinic.

Melissa is Grace's Occupational Therapist

Here is Dr. Scrivven, Grace's Pediatric Surgeon from Stonybrook, Long Island

Medical Update, Cincinatti, Jan 21st, 2005, 3:30 PM: Although most of Grace's procedures were successful her recovery lacked the same enthusiasm. Grace underwent another esophigial dilation, her second since September. It went very well. Along with that, Grace's G-tube was replaced to stop the leaking from the site. She will benefit from this 100% because now we know that she is getting all of her meds and can receive some relief from them. After these procedures, Grace went to see the dental clinic; unfortunately, the outcome was not good and they extracted four of her front teeth to avoid a future abscess due to decay from her disease. This made for a very uncomfortable and frustrated little girl. Grace was administered some heavy narcotics which compromised her oxygen levels. In turn, Grace needed a blood transfusion. She also had a very bad reaction to the meds and tore open large areas of her skin on her face and body from thrashing and scratching. After passing out due to asphixiating 3 times due to low oxygen levels it was then decided to sedate Grace, intubate her, and administer a paralytic drug that literally puts her in a state of paralysis. For the next 24 to 48 hours she will sleep peacefully and will be taken off the breathing tube to see if she can do it on her own. This will give Grace some time for her little body to heal her wounds and strengthen up for another long battle to recovery.
Please pray for Grace and please tell everyone you see about EB and Grace's website. It is imperative that we find a cure now so other little children will never have to go through such horrors. For now Grace rests and is in competent hands. Thank you all again for thinking of our little Princess Grace. Thank you and God Bless!
Love, Karen and Mike...
PS If you are a parent of a healthy child, hug them all the time and be grateful for their blessings in your life; our children are the best thing we have in this world!


Jan 19 ^th , 2005: Cincinatti, OH: After arriving safely in Cincinatti, Grace’s surgeons and doctors assembled together and laid out some goals for her visit to the hospital. On Thursday, January 19 ^th , Grace will undergo several procedures to make her quality of life as comfortable and pain-free as can be. If all goes well, she will have a safe and speedy recovery. Please keep our angel in all of your thoughts and prayers through these complicated times as they mean so much. Thank you and God Bless!

Jan 16 ^th , 2005: Centereach, NY: Grace will be going to the Cincinatti Children’s Hospital on Jan 17 ^th , 2005 for an emergency doctor visit and some tests. Over the past couple of weeks, Grace has been in a lot of pain. Her G-tube is constantly leaking, her esophagus has more strictures and her hemoglobin is also very low. Grace’s energy has decreased and her walking is limited. Grace will have a new power chair to help her move around. Through all of this, Grace smiles and reminds us how precious life is. Please keep praying that a cure is found and that grace will know a minute without pain. We will keep everyone informed as to when the surgeries take place. Please keep her in your prayers. Thank you all for your constant thoughts and contributions. It is because of you that we can take her to the very best doctors.